Mothers’ Experiences about Decisions to Use Children’s Proton Beam Therapy
2. Materials and Methods
2.1. Open Coding
- We created text through field notes and tape transcriptions.
- We read the text and made the segment.
- We extracted the properties and dimensions from the segment and gave them label names. The property is a concept representing a viewpoint while the dimension indicates what the dimension is from a given perspective. The basis for describing dimensions as “high” and “low” were expressions such as “very,” “not too much,” and gestures and facial expressions.
- The labels were combined, and categories were named after checking for similarities between properties and dimensions.
2.2. Axial Coding
- We used a paradigm framework of situations, actions/interactions, and consequences to create categories from the perspective of when, where, what to do, how, and the result.
- We examined the association between categories from the perspective of how the context changes depending on the combination of properties and dimensions, and how it promotes actions/interactions with other categories. We have created a related diagram that shows the direction of change with arrows and how it changes between categories. This related diagram shows the process that the participants followed in the phenomenon. So once the association diagram, we confirmed that all the participants’ storylines were explained. After that, one central category was selected and named as the phenomenon.
3.1. Category Descriptions
3.1.1. Conflict between Lifesaving and Future Worries
Interview, P4: As a parent, honestly, I had thought that even if our child would have some disabilities, we (parents) need to save [the] child’s life. However, when I realized that my child needed to receive radiation, I felt the desire that my child should not have any disabilities. In addition to saving children’s lives at this point, I strongly hoped that they would stay healthy for five, ten, or thirty years. The desire to avoid radiation therapy grew stronger, but there was no other option to save my child.
3.1.2. Belief That Only Proton Beam Therapy Is Available
3.1.3. Overcoming the Difficulties Associated with the Transfer
Interview, P10: I hesitated to transfer to another hospital. If I accompanied the child to another hospital, it would put more stress on the other children. Since the diagnosis of my child’s illness, I had been spending time supporting the child. The other children had become psychologically unstable. I wanted to play many roles for both the ill child and their sibling as a mother, but I have limitations. At that time, my husband and my mother had supported me.Interview, P2: I was worried that I had to deal with the problem alone without my husband if my child’s physical condition changed after the transfer. I felt responsible for it strongly and I was anxious.
3.1.4. X-rays Are Inevitable
3.1.5. Increased Anxiety about the Child’s Future
Interview, P8: After the transfer, I was convinced that I could no longer get rid of my anxieties regarding my child’s late complication. I had always been worried about the recurrence of cancer in my child and secondary cancers. Even if the worry of recurrence is over, the worry of secondary cancer continues forever. My anxiety became even stronger when the treatment was about to begin.
3.1.6. Anxiety That the Disease May Progress
Interview, P5: It had taken about a week to make a mask for proton beam therapy. I understood, but [I was] worried that the tumor would progress. That time was very long for me.
3.1.7. Worry about the Treatment Choice until the Last Minute
Interview, P5: I had decided [on] my child’s proton beam therapy, but then I got lost [in] my decision. My child had another option [of] undergoing surgery. I had been worried and thought [about it] until the last minute.
3.1.8. Switching from Feelings of Anxiety to Motivation to Receive Treatment
Interview, P4: There were a lot of anxieties, but the treatment was about to start and there was a lot to do. So I switched to not thinking about anxiety.Interview, P5: I thought that although I would worry again after the irradiation ended, for the time being, I thought I had to finish the irradiation. It was my primary first goal to finish proton therapy for my child’s safety. Perhaps, in a sense, since there were a lot of things to do about my child’s irradiation every day, I didn’t have time to think about my anxieties. So during the irradiation it might have been easier for me than before the irradiation.
3.1.9. Accepting Anxiety and Having a Positive Feeling about Treatment
Interview, P10: After the transfer of the child, I had been told by a doctor about the side effects, and I became more anxious, so I called my husband and talked about the doctor’s explanation and my feelings. Actually, I wished we had heard the doctor’s explanation together, but my husband had been taking care of our other children, so he couldn’t come. On the phone, we had discussed my worries about it. Looking back, we noticed that we had known that it is not an all-purpose treatment, and could notice this way was best for our child again. This way we could have tried to do it with a positive attitude.Interview, P8: I contacted my mother. She told me to face my child’s present life rather than to worry about the future. I had been thinking about the child’s future. But then I was convinced that the most important thing is to save my child’s life. I remembered my intention and could feel positive about the treatment again.
3.2. Description of the Process Pattern
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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|Yolk sac tumor||1|
|Category||Brief Definition||Main Properties||Range of Dimensions|
|Conflict between lifesaving and future worries||Radiation is necessary to save the child’s life, but there are risks for later complications in the future. They had concerns about the decision for undergoing radiation therapy.||Degree of worry about the future|
Degree of hesitation to receive treatment
|High (a); Low (b)|
High (a); Low (b)
|X-rays are inevitable||They thought they had no choice but to choose X-ray therapy to save their children.||Degree of recommendation from doctors and family||High (a)|
|Belief that only proton beam therapy is available||They strengthened their belief that the only treatment children should receive is proton beam therapy.||Degree of expectations||High (a); Low (b)|
|Overcoming the difficulties associated with the transfer||They had difficulties in transferring for treatment. They were worried about taking care of other siblings left at home without their mother, and they were not confident in supporting their child’s treatment in a new environment. They wanted to do it for their child, and they overcame difficulties with their families.||Degree of expectation|
Siblings of the child
Degree of own anxiety about the new environment
|High (a); Low (b)|
With (a); Without (b)
|Anxiety that the disease may progress||They felt that the preparation period for starting irradiation was too long. They vacillated in their decision with other options.||Feeling that the length of time is too long|
Presence of other options
|High (a); Low (b)|
Have (a); Nothing (b)
|Increased anxiety about the child’s future||Prior to starting the irradiation, their anxiety about the child’s future increased. With a doctor’s explanation, they had to contemplate the risks of later complications again, which they had been trying not to think about.||Degree of anxiety they had before|
Degree of sharing anxiety with others
|High (a); Low (b)|
High (a); Low (b)
|Worrying about the treatment choice until the last minute||Although they had decided to receive proton beam therapy, once its start was imminent, they were in a fog with other treatment options.||Degree of hesitation||High (a)|
|Switching from feelings of anxiety to motivation to receive treatment||They were not free of anxiety but felt that they should not think about their anxiety, to support their child’s treatment. They thought the important thing at the moment was to concentrate on the treatment because the treatment would be completed safely.||Degree of anxiety for the child’s future|
|Accepting anxiety and having a positive feeling about treatment||They could accept the anxieties and think that these feelings would be inevitable to some extent, through looking back on their decision-making with their families and medical staff. They could try to support their child’s treatment with positive feelings.||Degree of anxiety for the child’s future|
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Ozawa, N.; Fukuzawa, R.; Furuya, K. Mothers’ Experiences about Decisions to Use Children’s Proton Beam Therapy. Children 2021, 8, 274. https://doi.org/10.3390/children8040274
Ozawa N, Fukuzawa R, Furuya K. Mothers’ Experiences about Decisions to Use Children’s Proton Beam Therapy. Children. 2021; 8(4):274. https://doi.org/10.3390/children8040274Chicago/Turabian Style
Ozawa, Noriko, Rieko Fukuzawa, and Kayuri Furuya. 2021. "Mothers’ Experiences about Decisions to Use Children’s Proton Beam Therapy" Children 8, no. 4: 274. https://doi.org/10.3390/children8040274